Improving health care requires patient involvement. For people with Lynch syndrome, general and specific areas can be identified in which it is important for health care professionals to collaborate with patients to improve care. This collaboration is mutually beneficial; better care for the patients, reduction of work load and higher chance of funding of research proposals for health care professionals. Patient organizations are comprised of patients that are often more educated and motivated to participate in discussions and workshops. In addition, patient organizations have access to a network of patients that can provide a broad overview of the needs and requirements of this group. Thus, patient organizations are the partners of choice in the collaboration of health care providers and patients. In this commentary, I outline the areas in which physicians and patients should collaborate; Providing information, research and clinical trial design, and psychological care and peer support.

Swedish family and cancer data constitute the largest source on familial cancer in the world. We analyze here familial risks in prostate cancer (PC) with focus on multiple affected brothers and comparation of full-brothers to maternal and paternal half-brothers. Age-specific incidence and standardized incidence ratios (SIRs) were calculated for PC in brothers. Curves for relative risk (RR) by diagnostic age were plotted for risk distributions. A total of 115,066 PCs were diagnosed in 1.2 million men. Familial SIR for full brothers was 2.23, for maternal half-brothers it was 1.92 and paternal half-brothers was 1.34. Considering SIRs with least possible detection bias (7+ years after first brother's diagnosis) the above SIRs were 2.06, 1.66 and 1.41. SIRs in full brothers increased stepwise by the number of affected brothers reaching 21.33 when 6 brothers were affected. Age-RR curves for two affected brothers declined evenly from RR 2.8 at age 45 to below 2.0 at age 80. When four or more brothers were affected, a discrete high-risk peak (RR 4-7) was detected between ages 60 and 69. Data on full-brothers and half-brothers indicate that familial risk in PC is largely genetic which is also supported by discrete RR peaks in high-risk families at ages matching preferential penetrance age for known predisposition genes of PC. Familial risk increased already when two brothers were affected calling for clinical vigilance concerning family history. Family history should deserve a place as an inclusion criterium in schemes for PC screening.

This study compares three hereditary colorectal cancer (CRC) registries-the Iranian Hereditary Colorectal Cancer Registry (IHCCR), the Singapore Polyposis Registry (SPR), and the University of Cape Town Familial CRC Registry-to illuminate diverse approaches to identification, management, and research across different healthcare systems. Each registry, while emphasizing patient diversity, employed unique strategies reflecting available resources and epidemiological contexts. The IHCCR, leveraging WES, revealed considerable genetic heterogeneity, including novel mutations. The SPR, a nationalized service, focused on structured surveillance and management of FAP and other polyposis syndromes, highlighting the challenges of cultural conservatism and limited public awareness. The UCT registry, initially concentrating on Lynch syndrome, expanded to encompass other hereditary CRC syndromes, revealing a high prevalence of these conditions within the South African population. All three registries encountered challenges related to access to genetic testing and early diagnosis. The registries' combined experiences underscore the critical need for integrated, culturally sensitive strategies combining genetic testing, enhanced surveillance, and family-based management to improve outcomes for individuals and families affected by hereditary CRC. Future efforts should focus on addressing disparities in access to care and expanding research to improve understanding and management of this complex disease.

Tumor molecular profiling (TMP) with germline genetic testing (GGT) is becoming standard practice in pediatric cancer care. Yet, little is known about parents' understanding of these practices, or testing's psychosocial risks and benefits. This study characterized parental knowledge, attitudes, and beliefs about TMP and GGT. A cross-sectional, mixed-methods study was conducted among N = 75 parents of children with cancer. Parents completed a survey on cancer-related knowledge, attitudes toward GGT, psychological stress, communication, and decision-making. A subset (N = 31, 41%) then completed interviews about TMP and GGT that were content-coded and interpreted in light of survey findings. Correlative analyses indicated that parents' greater understanding of cancer and genetics was associated with favorable attitudes toward GGT (r = 0.34), preferences for more information about GGT results (r = 0.56) and reduced decisional regret about GGT (r = -0.61). Families who communicated less openly held more favorable views on GGT (r = -0.38) and preferred more information about GGT (r = -0.39), but had children who were more anxious (r = -0.36). Parents who were more anxious (r = 0.40) and who favored GGT (r = 0.41) also had children who were more anxious (all p's < 0.05). Thematically, most parents recalled their children's test results (94%), but recollection of testing type was suboptimal (58% for TMP, 61% for GGT). Nearly 70% believed it would be helpful to speak to other families for psychosocial support; additional potential resources included healthcare providers (31%) and websites (23%). When children with cancer undergo TMP and/or GGT, their parents would benefit psychoeducational resources to improve outcomes.